Weekly Updates! - April 25, 2025

Weekly Updates! - April 25, 2025

Hello. I hope everyone has had a great week. I have a few updates to share:

• SAVE THE DATE: 2026 TBRS Summit

• • • The TBRS Summit is planned for early 2026!
      • WHEN: Weekend of March 21, 2026
      • WHERE: Morgan’s Wonderland Camp in San Antonio, TX, USA
    • The TBRS Summit is where the magic happens—families, researchers, and clinicians come together to connect, learn, and push forward the future of TBRS care and research.
    • Stay tuned for more details, including registration and agenda updates!

• THIS WEEKEND: TBRS Friends and Family Support Group - April 26, 2025

• • • This event will take place Sunday, April 26, 2025 at 2:00 PM Eastern Time via Zoom
      • Here is the link to join: https://us02web.zoom.us/j/7181674734?omn=84244123124
    • The TBRS Community offers a monthly Friends and Family Support Group via Zoom. Families from all around the world can participate. We create a safe place to share thoughts, feelings, concerns, and emotions without judgment. The meeting seems to take a different shape every time we gather—sometimes we focus on sharing resources or experiences, but we always seek to make everyone feel comfortable and supported.
    • Any parents or caregivers of someone diagnosed with TBRS are welcome.

• Upcoming: Special Presentation - TBRS Disease Impact

• • This event will take place Wednesday, May 7, 2025 at 4:30 PM Eastern Time via Zoom
    • Here is the link to register: https://givebutter.com/TBRSdcm
  • We’re excited to share that Mylie, a graduate student in Genetic Counseling who recently completed a Disease Concept Model for Tatton Brown Rahman Syndrome (TBRS), will be presenting her findings to the TBRS Community!
  • This presentation will highlight the real-life impacts of TBRS on individuals and families, as captured through interviews and research. It’s a chance to hear how your stories and experiences are helping shape the understanding of TBRS in the research and medical world.
    • We hope you'll join us for this important conversation! If you are unable to attend, please sign up anyway! We will share a recording with those who are unable to attend live.

Thanks! Please reach out to me with any questions at kit@tbrsyndrome.org.Kit Church, CARE Manager